Marie's Story

Marie's Story

On November 19th, 2010 my life changed forever. Up until that day, I defined myself as wife, mother and high school teacher. I loved my life. But on November 19th, it changed forever.

That was the day that I had a 10-hour brain surgery to remove a golf ball sized tumour from the left side of my brain. Fortunately, the tumour was not malignant; unfortunately, the surgeons at Toronto Western Hospital were unable to remove the entire tumour. As well, in the course of the surgery, a major nerve was damaged which caused severe pain in my face.

After the surgery, I spent a week at Toronto Western and then was transferred to a rehabilitation hospital, I was there for three weeks to help with my recovery. I don’t really remember my time at Toronto Western, but I felt very well taken care of at the rehab centre. The first thing I remember there, was a very gentle and caring nurse removing 50 staples from the left side of my head. I was pretty freaked out, but she made it okay.

For the next 3 weeks, I had lessons on how to improve my motor skills, my language and math skills and my memory. The staff there were wonderful and I was feeling better physically and mentally when I went home.

It was December 23rd; almost Christmas! Even though I felt better, I actually was very nervous about leaving the hospital and going home even though my husband and two daughters had given me such incredible support. In fact, they had done all the Christmas shopping and decorating and when I went home the house looked beautiful and there were wrapped presents under the tree. Lots of friends and family visited, sent cards and flowers and wished me a speedy recovery. I was very fortunate to have so much support.

But, after all the excitement of Christmas subsided, I was very anxious and concerned. I knew I wasn’t “cured”, but I didn’t know exactly what was wrong. I saw my family doctor on a regular basis, and she was wonderful. I had numerous specialists: an ophthalmologist, an endocrinologist and an ear, nose and throat doctor for starters. Unfortunately, none of them really knew about brain injury and they didn’t know how to solve the steady pain I was feeling in my face.

When I saw my neurosurgeon eight weeks after my surgery, he was happy with my surgery recovery and was waiting to see whether I should go for radiation treatments or not. That was on January 3rd, 2011 and I didn’t see another ‘brain specialist’ until April, 2011. By then, I was pretty much ready to ‘call it quits’. I had steady pain in my face (trigeminal neuralgia; they call it the suicide disease), I was very depressed and I was tired of pretending I was okay.

When I got the appointment with the radiation oncologist at Princess Margaret, I saw a glimmer of hope and in fact, things would start to improve. Princess Margaret is an amazing hospital. The Pencer Brain Tumour clinic is wonderful. My husband, my two daughters and I went to the 18th floor and walked into a beautiful waiting room complete with shiny wood floors and comfortable couches.

On my very first visit, I not only saw the radiation oncologist who would eventually supervise my radiation treatment but was also given a new prescription for my facial pain. The doctor told me that it was ‘permanent’ pain and that I would likely need medication for life.

I was then sent two floors down to see a psychiatrist who dealt with patients with who had undergone a serious operation and suffered from depression, that was me! He listened to me pour my heart out and say things I didn’t t expect to say. We had a great rapport and seeing him was cathartic. He gave me a prescription to help with my depression and my pain and arranged for me to see him the next week. It was like a rescue raft! I now had two new doctors ,a few new pills and a new appointment for an MRI procedure. I went home and, for the first time in a long time, I felt positive.

It wasn’t until July that I started my radiation treatment at Princess Margaret Hospital. I had to have six weeks of treatments so I was going to have to live in Toronto while I was having the treatments. Luckily, I had a couple of choices of where to stay. Princess Margaret had a lodge for people undergoing radiation that I could stay there for $70.00 per week (almost free) and my daughter had room at her apartment (as long as we provided a pull out couch for sleeping) and she wanted me to stay with her.

I decided to stay with my daughter, Melody. I was nervous to stay with her because I wasn’t sure what kind of side effects that I would have from the radiation treatments and I had no idea how I would get from her apartment to the hospital and back each day. I wasn’t well enough to take a bus and subway, my license was suspended due to my surgery and my husband had to work. I mentioned this problem to my radiation oncologist and she told me about the volunteer programme run by the Canadian Cancer Society. Amazingly, she told me someone would pick me up at my daughter’s apartment, drive me to Princess Margaret and then bring me back to the apartment.

Guess what? A wonderful volunteer picked me up each day and drove me back. We had great conversations and I looked forward to my rides to the hospital. They gave me faith and provided inspiration. Living at Melody’s was another step towards recovery.

I finally went back home, permanently on July 20th, 2011, my husbands 55th birthday!

Now what….?
 


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